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Following our Process, making Progress and finding Power at the Third World Indigenous Cancer Conference

Introduction by Croakey: The strength drawn from international collaboration and leadership to achieve health equity for the world’s Indigenous peoples was very evident at the recent World Indigenous Cancer Conference.

In the article below, Danielle Manton outlines how the three interrelated conference themes of Process, Progress and Power were woven throughout the plenary presentations, as global leaders in Indigenous cancer care spoke their truths to motivate, challenge and inspire the 621 delegates.

The conference occurred on the eve of National Close the Gap Day in Australia, which, in addition to highlighting ongoing inequity, provided an opportunity to showcase practical examples of Blak Process, Progress and Power achieving real gains for the lives of Aboriginal and Torres Strait Islander people.


Danielle Manton writes:

The Third World Indigenous Cancer Conference (WICC) opened strongly, with Uncle Tony Garvey welcoming us, the 621 conference delegates from countries all over the world, onto the land of his ancestors, his family, the Wurundjuri peoples.

Following this, the conference boomerang, created in 2016 for the inaugural WICC and taken to Calgary for the 2019 WICC, returned to the continent and was presented to Conference Convenor Associate Professor Kalinda Griffiths and Professor Tom Calma, in a beautiful, intricate hand-crafted leather case designed and made in Canada.

In returning the boomerang, previous host Lea Bill, from Pelican Lake First Nations in Saskatchewan, told the delegates: “When you look at the [conference] themes for 2024 you can see we are progressing in unison as Indigenous peoples across the globe – where we think and feel that conversation and dialogue and priorities need to go.”

 

Following this, Griffiths picked up on the importance of the collective moving in unison, “to have discussions about what we should be talking about.” She also spoke to the conference themes, PROCESS | PROGRESS | POWER.

Griffiths told the conference, “We know there is a requirement in Western society and the systems which often provide the services, to recognise the roles that our knowledges and ways of doing things improve lives – not only the lives of Indigenous Peoples, but of all. This is what we call process – our ways of knowing, being and doing in all that we do.”

Griffiths continued, “We face some of the greatest global challenges. Cancer is one of these challenges and, despite its increasing inequity, we have the potential to work towards its elimination – cervical cancer is an example. It’s on track to be eliminated, and risk factors such as smoking are reducing – as well as building a next cohort of cancer care researchers. This is progress.

Griffiths went on to say, “It has been wonderful to watch you all take up space within these systems. Our communities already know what is required to happen in order to close these gaps. There is sacred history within this Country, and knowledge that has not diminished despite every colonial attempt. Indigenous peoples across the globe have held their space since the Dreamtime. We are the carer of these knowledges and the ways of supporting our land, our communities, and our families – this is power. It is ensuring we are leading; we are directing, we are deciding. We’re supporting each other in ensuring our spaces are ours.”

The themes of PROCESS | PROGRESS | POWER were reinforced by speakers throughout the conference.

Process

As Associate Professor Kalinda Griffiths stated in her opening remarks, process is how we do business, our way, proper way.

Professor Linda Burhansstipanov, member of the Cherokee Nation of Oklahoma and President, Native American Cancer Initiatives, reinforced this, saying, “As Indigenous people we are very similar to one another in what our struggles are. When our struggles are addressed by what the local Indigenous peoples say we need, and what we must have, they are the leaders. They are the hearts.”

Indigenous peoples are diverse within our own countries as well as globally. While general principles and ethical practices translate between different environments, programs, policies and practices need to be responsive to the local community and their needs. Burhansstipanov put it simply: “We work from the ground up – local leads.”

Indigenous peoples globally are in the minority, although we are strong together and can be influential. We rely on our co-resistors and our collaborators.

Later in the conference, Professor Brenda Elias, Professor in community health sciences from the University of Manitoba, posed a challenging question regarding process from the perspective of our allies, our collaborators, our co-resistors: “Can a colonial system decolonise a cancer screening system within a colonial framework? Can we do this? Are we in the right space to do this?”

Professor Alex Brown, Yuin clinician/researcher and Professor of Indigenous Genomics at ANU | Telethon Kids Institute, presented in the Day two Plenary on the topic of National agenda setting in genomics, personalised medicine and clinical trials to improve the lives of Indigenous peoples.

Brown spoke of the legacy that needs to be undone and the process that needs to be established so Indigenous peoples can trust the system, trust the process. He said, “Science was used as a tool, as a weapon to portray us as less than human. It was a lie.”

He went on to say, “choices made by governments are challenges for us as Indigenous scientists and scholars and community members and parents about what is the right way forward for all of us”.

Brown highlighted the process of equity saying, “inclusion doesn’t equal equity. Equity is a purposeful set of functional steps towards responding to people’s needs as they identify them and unpacking the structural drivers of inequalities themselves.”

Further to this Brown said, “we are less likely to be screened, to be treated, to be offered all of the things science and medicine have to offer – to be treated for the conditions and challenges that face us. This is the face of inequity.”

Professor Gail Garvey, Kamilaroi woman, NHMRC Research Leadership Fellow and Professor of Indigenous Health Research at the University of Queensland, also acknowledged the process is not working for us, saying in another plenary, “this system we’ve had has been failing and not working for us.”

Later, Brown spoke specifically to Process asking, “Do communities trust this process? How will genomics be used against us? History has not been kind to the needs, aspirations and hopes of Indigenous peoples across the globe. Who is in control? Who makes the decisions? Who has access to this data? How do we govern? How will it help our children and children’s children to come?”

Brown acknowledged that, as technology advances – as precision medicine, specifically precision oncology, advances – we need to get the process right for us to be able to access the best care science and medicine have to offer.

Progress

In a plenary on Day two of the conference, Dr Freddie Bray, Head of the Cancer Surveillance Branch at the International Agency for Research on Cancer (IARC) in Lyon, France, spoke of the current global challenges in measuring cancer in Indigenous peoples.

He asked, “What is the progress in reporting of cancer in Indigenous peoples?”

Bray conceded there has been progress: “There are best practice guidelines now in terms of identification of Aboriginal and Torres Strait Islander peoples in data. Things are moving in the right direction but there is a long way to go.”

Bray drew on the international Indigenous rights instrument the United Nations Declaration on the Rights of Indigenous Peoples UNDRIP, commenting, “we know Indigenous peoples have the right to be actively involved in developing and determining their own health programs, but there is this difficulty in obtaining a global assessment of Indigenous peoples’ health status”.

Bray recognised that further progress is required for international data to be a tool to uphold these principles. He said, “there does need to be a lot more work undertaken to build collective systems to look at the current ways of identifying Indigenous data – how we are able to link the cancer registry data, the cancer mortality data, how that compares with how we do population data, in an inclusive manner honouring data governance and data sovereignty.”

Bray used the platform to call the delegates to action: “Can the World Indigenous Cancer Conference be a springboard to document challenges across countries around the world to look at the development of an equity-led, knowledge-driven, outcomes-focused Indigenous community-centred strategy of data governance from a global perspective? Including collection, analysis and dissemination of data with an aim to reduce the burden of cancer in Indigenous communities worldwide?”

This is a call for progress!

Genomics is an interesting area, as progress has been made with a clear forward trajectory. However many aspects for Indigenous peoples, families and communities are still in the process stage. We need processes, structures, protections, and assurances relating to the various aspects of genomics. However, we are starting to understand more and become curious, which is progress.

There is great potential in precision medicine for Indigenous peoples. Professor Alex Brown told the conference, “Genomics can guide treatment specifically in precision oncology, in synergy with the other things that we do in the treatment of patients. It can help identify the right treatment.”

Brown highlighted the progress required to overcome the barriers to realising this potential, stating, “there are challenges and inequities to overcome right across the continuum of care. If we can’t make sure Indigenous peoples have access to screening, how can we possibly ensure they have access to equitable advanced frontline cutting-edge therapeutic responses including precision medicine?”

Brenda Elias identified progress required for the non-Indigenous delegates in the room, stating, “We have a big ship problem.”

“Allyship is still based in a colonial framework… When allyship is defined by non-Indigenous peoples shaped by a person in a position of advantage, it is an othering process. Why are allies defining allyship?”